Saturday, July 16, 2022

Saturday, July 16, 2022

Tonight's picture was taken in July of 2003. Mattie was a year old. It was his first trip to the Outer Banks of North Carolina. It was around July 4, and Mattie had his red, white, and blues on! We paused in the shade to take this photo, but right near us with Hatteras Lighthouse. I am a lighthouse aficionado, and I wanted to introduce Mattie early on to these great structures. 

Quote of the day: Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another’. ~ Peggy Speers

Tonight's quote comes in many different forms and phrases. It is one of those platitudes that I despise. As if you need to remind a caregiver to take care of one's self! Given my personal experience with caregiving for both a child with cancer and older adults with dementia as well as my professional knowledge and research with caregivers..... I have to say that caregivers KNOW quite well that we need to take care of ourselves. We can feel the toll our daily grind takes on us physically and emotionally. However, the problem with all of this is what we do is crucial to the survival of those around us. Therefore, taking a break in some cases is just not reasonable or possible. As I say there are only so many hours in the day. 

All I know is balancing the care for my mom and dad together absorbs my every waking moment. So much so that it is hard for me to have a conversation with Peter, I rarely walk Sunny anymore, and it is close to impossible to get Foundation work done. On top of which I am chronically exhausted. If all of this isn't bad enough, my mom keeps saying that they should just go to a nursing home because they are a 'burden' to me. 

Keep in mind that I never use the term BURDEN. It is not a term I care for at all. When my dad hears my mom mention a nursing home, he gets very upset and at times tells her to just "shut up." The issue with working with people who have dementia is they really no longer have insights into their own situation, much less anyone else's. However, dementia makes you turn deeply inward and therefore one's needs are the only ones that seem to matter. 

Should my parents be in a nursing home? It is a hard question to answer. Certainly they both would qualify and need around the clock care and support. With that said, I am abundantly aware that such a dramatic change in living environment, would cause significant decline in both of them. If I am willing to accept that this would be the beginning of the end, then I could move forward with such a decision. But I am not there yet.  

What drives me crazy however is when my mom says that I view them as a burden. She will say this whenever I mention that I want time to myself, that I want to sleep later, or perhaps see a friend. None of these are doable and my expression and desire for freedom is met with the discussion of burden. It is a wicked spiral that at times makes me upset, frustrated, and angry. I remind my mom that what I am doing, not many other adult children would do. I have given up living in order to manage their daily needs. 

I am not doing light caregiving. I am managing showers, dressing, toileting, cooking, cleaning, laundry, doctor appointments, therapy sessions, driving from place to place, bills, and the list goes on. Given my dad's issues with irritable bowel syndrome, I am constantly cleaning him and the bathrooms. Literally I could spend the day doing this and I have learned to eat quickly (which I do not like doing) because no meal is complete without a bathroom emergency. 

Meanwhile our boy is spending a lot of time in the basement. Sunny hates the rain and storms and the basement tends to be safer and quieter for him. Got to love that Sunny smile. 

Peter and I are trying desperately to get Sunny to take his antibiotics. But he is onto us! He knows that treats are typically filled with DRUGS, which make him sick. So he is holding out and is opting for NOT eating altogether. The vet's assistant says we need to open Sunny's mouth and pop the pills down his throat. I DON'T think so! As a result I am trying to sneak his pills in everything from cold cuts, sausages, pill pockets, and even cheese. Nothing is working. He will eat and spit out the pills. Clever fellow, who unfortunately doesn't like peanut butter, because that stuff covers the smell and taste of everything! 

Early on after we adopted Sunny, we switched him off of dog food. I found that the kibble made Sunny gain a ton of weight. Because his vet was constantly on my case, I decided to STOP all dog food and cook Sunny's food myself. What did Sunny used to eat? Ground chicken, ground beef, ground pork, steamed string beans, and sweet potato. On the weekends, I would make him scrambled eggs with ham and the list goes on. Now though whatever I cook for Sunny he doesn't want it. My boy used to love to eat, and now not unlike Mattie, we are jumping hoops to get him to eat. Eat ANYTHING!

Friday, July 15, 2022

Friday, July 15, 2022

Tonight's picture was taken in July of 2007, on our wedding anniversary to be specific (which is TODAY!). I can tell because once a year we would take out two special wine goblets. You may see them on the table. One is red and the other is blue. They belonged to my paternal grandparents, who were also married on July 15th (many many years ago). That day we had a meal outside on our deck. Mattie's kiddie pool took up half of our deck and in the lower right hand corner, you can see Patches sitting on Mattie's sand box lid. The whole family was together. 

Quote of the day: Those monumental anniversary celebrations aren't what ultimately determine the actual direction of our marriage. Rather, it's the here and now. It's those daily decisions we make individually and together that influence how our relationship actually fares in the long run. ~ Ashleigh Slater

Today is our 27th anniversary, after dating each other for 7 years prior. Peter and I go back a long way together. This morning, Peter brought me up an hot tea (which he does every morning now that my parents have moved in) while I was getting ready and surprised me with a beautiful card and gift. This figurine symbolizes a married couple, but I told Peter that I have nicknamed it, "the survivors." 

Peter and I are indeed survivors of just about everything possible that can happen to a couple. Our list is long, and yet despite various issues and crises, we are together. Life truly has tested us on so many levels, but I strongly believe the fact that we started off as friends and dated so long, have helped us navigate our complex lives.  

July 15, 1995! 

Our wedding day was super hot and terribly humid. We got married in Scarsdale, NY at the church I attended as a child. We were married by the monsignor of the church, who oversaw my confirmation when I was a teenager. 

Our reception was at a country club in Rye, NY. Though the photographer took many staged photos (which I wasn't happy about), he did capture this sweet impromptu moment. 

Our wedding party. 

Thursday, July 14, 2022

Thursday, July 14, 2022

Tonight's picture was taken in July of 2003. Last night I posted the photo of Peter making the climb up the spiral staircase inside of Corolla Lighthouse. This was the photo we took up on top! Mattie did not look like a happy camper. He did not like the wind or the height, so we did not stay there long. But both boys made it together to the top. 

Quote of the day: When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible. ~ Christopher Reeve

What a great quote! HOPE is everything when dealing with a crisis and certainly needed when dealing with healthcare issues. However, why is that so many doctors have forgotten this important concept? Their job is NOT just to treat the disease! In treating the whole person, doctors must remember that we are human and have thoughts and emotions, and therefore we are MUCH MORE than our data! Yesterday's amazing experience to the neurosurgeon office reignited my hope in the health care system! However, that feeling did not last long. It dissipated while visiting Sunny's oncologist today. He and I are NOT on the same page about the importance of communicating to each other between clinic visits. Sunny has been on all sorts of meds, and each of them have made him very ill. So much so, that he isn't interested in eating. Therefore, yesterday I elected to stop Sunny's antibiotics for his urinary tract infection. The doctor has had over a month to treat this infection, and poor Sunny, he still has it. When I have issues, I call his office and get one of his myriad of assistants. Some of them are excellent and others I want to throttle! Needless to say, when I asked him how to get a hold of him directly he had the audacity to say.... "I am too busy and see too many patients. That is why I have assistants!" I assure you if a human oncologist said this to me, that would be the last encounter we ever had. But there aren't many pet oncologists near me, so I feel stuck and very frustrated tonight. This is on top of having a very full day!

I am the queen of UTI's and I don't want Sunny to suffer. But on the other hand I don't want to see him listless and not eating. I stopped his antibiotics yesterday because I knew I was going to see the vet today! The vet gave me a hard time for choosing to do something without consulting him. This guy is totally out to lunch, and should try to balance what I do on a given day. Besides waiting 90 minutes for him to grace us with his presence, I felt rushed because he had to leave by 5pm. His issues are not my problem. Why should they be.... if the issues I am paying him for aren't his?! 

We had another violent rain storm last night! All I know is I feel that it rains much more where we are now than when we lived in Washington, DC. On our porch, I hung two wind chimes, with solar balls. One chime is a moon, for Mattie Moon!

The other chime is a sun, for Mattie Miracle. 

Peter took a video of me helping my dad down the stairs. I do this every morning and evening! This side way technique is what he learned in acute rehab, during hospitalization in March. 

I got my dad to the hospital this morning for his occupational therapy appointment. As you can see, he was sleeping until the therapist came for us. If my mom and my dad aren't moving they are both SLEEPING. 

We met a different therapist today. She was equally lovely, but she worked my dad hard. The therapy takes place on a bed like table. They are working to try to stretch his muscles so he can lie flat. After years of using lots of pillows being his head and knees, my dad seems permanently hunched over and never looks up. They are working on changing this, but it is a hard process. 

While in the therapy room with him, I was sitting on a stool with wheels. It enabled me to see what my dad was doing and participate in therapy. Some administrator walked in and observed me on the stool and gave me a talking to! Apparently visitors are not allowed on the stools. She treated me like I was about 90! I said... do I look infirmed or like I can't sit appropriately on a stool!? I wasn't happy with her demeaner and so many things set me off today. One more thing and I am going to snap. 

Wednesday, July 13, 2022

Wednesday, July 13, 2022

Tonight's picture was taken in July of 2003. Mattie was a year old and it was his first trip to the Outer Banks of North Carolina. That day we took him to the Corolla Lighthouse. Back then, you could walk up the spiral stairs with a child on your back. Now forget it! Mattie was absolutely fascinated and we all made it to the top and had a wonderful adventure. 

Quote of the day: Intuition doesn’t tell you what you want to hear; it tells you what you need to hear. ~ Sonia Choquette

I find that I am so tired, I have to pull myself out of bed in the morning. But I got it together, got my dad up, washed, and he had breakfast. My dad goes to his memory care program three times a week. So today, he was there, while I was able to take my mom to see a neurosurgeon today. Neurosurgeons just don't do surgery, they have an intricate understanding of the neck and brain. I had my mom's cervical spine MRI in hand and truly I wasn't very concerned about her spine given the radiologist's report. 

Everyone at this doctor's office was very patient focused. His nurse was an absolute peach. She welcomed us to the office, thanked us for waiting, and wanted us to have a pleasant experience. I knew the doctor had to be special if his staff were this attentive and patient centered! I was 100% correct. I highly recommend this doctor, and for those of you who are blog readers know, I am NOT very complimentary typically! This doctor is the perfect combination of highly competent with a great bedside manner. 

When he came in, he did not talk to us about medicine or what brought us in. Instead, he talked to us like two human beings. We in fact had a great conversation about being Italian (as he is Italian too), we discussed the great Italian food of New York, and trips to Italy. So not only a great doctor, but is worldly and understands that patients are not just numbers and data. We have feelings, emotions, concerns, and of course interests and passions. 

He gave my mom a thorough examination and talked through her MRI scans with us. Thankfully he feels structurally her neck is good and doesn't need surgery. She has degenerative discs and he recommends physical therapy. Which we will do at the clinic adjacent to his practice. However, what he confirmed for me was what I INTUITIVELY knew, or at least suspected, and that is my mom most likely has a neurological disease or issue. I told him that I already made an appointment for her to see a neurologist on July 28. Thankfully he provided me with a script for a brain MRI for my mom, so when we see the neurologist, we will have data in hand. I asked my mom's primary care doctor to do this, but DOPEY lives up to his name. He is a dope and truly doesn't value what I am bringing to the table. Even if I did not understand the nature of healthcare, I do know my parent's better than anyone else. If I am saying something is wrong, then SOMETHING is wrong!

Meanwhile, at 5pm, I got back home and did my dad's physical therapy exercises with him. Honestly I do not stop from the moment I get up until I fall asleep. I am the caregiver to two parents, both of whom have many, many needs, and unfortunately I think today was a rude awakening for my mom. Now it is not just Vicki saying something isn't right, she heard it from the doctor. 

Tuesday, July 12, 2022

Tuesday, July 12, 2022 -- Mattie died 667 weeks ago today. 

Tonight's picture was taken in July of 2003. Mattie was a year old and this was his first trip to the beach. It was a tough visit, as Mattie spent most of his time playing with the hose on our the deck. He was deathly afraid of the sound of the ocean and didn't like the feeling of the sand. That changed the follow year that we visited! I am glad we kept at it, because Mattie loved building and playing in the sand and we made many wonderful memories in North Carolina. 

Quote of the day: A difficult time can be more readily endured if we retain the conviction that our existence holds a purpose, a cause to pursue, a person to love, a goal to achieve. ~ John Maxwell

It was another busy day! I just couldn't get up this morning. Right before my dad went to sleep last night, he had a bout of diarrhea. I assure you at 10pm, this is the last thing I have the energy for. Unfortunately the diarrhea continued today. Typically I refuse to give my dad Imodium, but today I had no other choice. Of course trying to figure out what caused this is another story. I suspect he ate something at the memory center the day before, but I can't be certain. At one time we could control my dad's irritable bowel syndrome better with diet. Now there is no predictability. This makes it very difficult trying to take him out, when even at home it is hellish to manage, as he goes all over himself. 

This morning, I made an appointment for two weeks from now with a neurologist for my mom. She has many symptoms that need to be evaluated and frankly I need to understand better what I am dealing with and how to more effectively support her. Her decline since I saw her in Los Angeles (April of 2021), is significant. Though Peter feels my mom's decline since she has moved in with us in December has been steep. So I am trying to be pro-active, because honestly both of them are candidates for an institution. I am trying very hard to manage their care so they can live in the community with us. 

This afternoon, I took my parents back to the hospital so that I could attend an occupational therapy session with my dad. While we were in therapy, I left my mom in the hospital atrium with a hot tea. Today's therapy session was intense and now I see the benefits of outpatient therapy. They can do more things given the equipment they have access to than can be done in our house. The question however, is will my dad benefit from this? After all, he did not remember even going for a therapy evaluation last week! 

There is never a break! My parents need constant supervision and support. I can't let them converse with a doctor or therapist alone, and certainly any therapy sessions require my support. It is a huge responsibility that has physical and emotional ramifications for me and PETER! 

Monday, July 11, 2022

Monday, July 11, 2022

Tonight's picture was taken in July of 2007. That summer I enrolled Mattie in a swimming class. It was a group class, and Margaret worked one on one with the children during certain parts of the class. Mattie wasn't in love with water or swimming. Not unlike me! Overall, I would say that Mattie had a healthy fear of the unknown, but despite how he felt, he was brave and tried and completed all his group sessions. 

Quote of the day: We don't even know how strong we are until we are forced to bring that hidden strength forward. In times of tragedy, of war, of necessity, people do amazing things. The human capacity for survival and renewal is awesome. ~ Isabel Allende

Based on last night's blog, here are the before and after photos. This was our basement in December. 

This is now the same space! Not how I want it, but definitely an improvement from December. 

The rest of the basement in December. 

Our current view. It is getting there and once emptied, I will have to figure out what to do with this space. 

My dad went to the memory care center today, and while he was there, I did some administrative work for the Foundation. I did not get a lot done, but it was a start. At around noon, I took my mom for a salad, and then we went back to Virginia Hospital Center, as she had her annual mammogram. This was her first time going to my hospital for a mammogram. Fortunately I got a copy of her last scan and report from Los Angeles, so the radiologist had something to compare it to today! While my mom was getting a mammogram, I went to the hospital's film library to pick up a copy of her MRI scan on a disk. Believe it or not, I head back to the hospital on Tuesday and Thursday, as my dad has occupational therapy. 

The occupational therapist set a goal of 6,000 steps a day for my dad. She cited all sorts of studies linking physical health to cognitive health, and how the more steps you take a day, the healthier you are. I have no doubt, but she clearly doesn't understand my dad. My dad, as long as I have known him, has been sedentary. He avoids physical activity at all costs. That has now come back to bite him frankly. When I got home from the hospital with my mom today, I looked at my dad's step tracker. He had walked only 500 steps! I lost it. 

I got my dad up and he and Peter walked several laps around our cul-de-sac. The step tracker is actually very helpful, because it confirms my suspicion, and that is my dad does very little activity all day long. He claims to do a lot of activity at the memory care center, but the data doesn't lie. It just isn't true. He actually moves less at the memory care center than when he is home!

Tomorrow when I attend the occupational therapy session with my dad, I will tell her 6,000 steps is not a reasonable goal. I would target 1,200 to start with, and even that will be a challenge! According to the NIH, normative data indicates that 1) healthy older adults average 2,000-9,000 steps/day, and 2) special populations average 1,200-8,800 steps/day. So I think I am on target with the 1,200! 

In addition to shuttling my parents around all day, I am doing all the cooking, cleaning, and laundry. It makes for an exhausting day, and I find I have an inability to focus on anything other than my usual routine and chores. 

Sunday, July 10, 2022

Sunday, July 10, 2022

Tonight's picture was taken in July of 2004. Mattie was two years old and that day we took him to Jockey's Ridge State Park. This park has the tallest active sand dune in the Eastern US. As you can see Mattie was excited about this adventure, so much so that he was trying to drag me up the  dune. Peter was snapping photos, but Mattie did not want to stop and pose. 

Quote of the day: Just as despair can come to one only from other human beings, hope, too, can be given to one only by other human beings. ~ Elie Weisel

If it were up to me, our basement would continue to look like this! Since my parents moved in (December 2021), Peter has been chipping away at boxes and bins in the basement. THANKFULLY, otherwise the basement would remain a warehouse! I just don't have the energy or patience to tackle this. Today however, I decided to go down with Peter to work on this! 

Is it just me, or do you find this sight overwhelming? Honestly I am lucky I got the first two floors functioning in the house. I have to take a photo of what the basement currently looks like. It is certainly better than this, but I have a LONG way to go! 

Peter and I went through many boxes and bins today and I got everything put away that we unpacked. But that further wore me out, and I don't need any help. 

The highlight of today was a friend sent me this photo! He and his family went to Barrel Oak Winery in Delaplane, VA. This Winery has been a raffle sponsor of Mattie Miracle's for over 7 years. What I did not realize is that the Winery has my thank you note framed and in glass on display at the Winery. How do you like that? I was touched by this and one day I will visit this Winery personally. I am very grateful for Barrel Oak's continued donations and support, which enables us to raise money and meet our financial goal each year.